When I was just eight years old I was taken to A&E because I was passing blood in my bowel movements. I was diagnosed with ulcerative colitis and autoimmune hepatitis, and was very lucky not be physically affected by it – except for the hospital visits, I lived my life the same as anyone else. My doctors said I was a quite a rare case and my consultant even did lectures and presentations about me at university. I’m now 30 and it’s still unknown why I have it when no one else in the family does.

Because I was so young when I was diagnosed I didn’t really understand autoimmune hepatitis and because I didn’t have symptoms, I thought I didn’t need my medication. From the age of 12/13 I started taking it as and when and would flush the rest down the toilet. At 16/17 I decided I was mature enough to deal with it on my own and went to hospital appointments without my parents. I also started drinking with friends. How very wrong and naïve I was.

My consultant tried to tell me what would happen if I didn’t take my meds. He took me to the liver ward and walked me round people who were severely poorly, but it didn’t make a difference. I thought it would never happen to me, but then I was diagnosed with cirrhosis of the liver (micronodular) and was placed on heavy steroids and immunosuppression. I didn’t like the feeling of being hungry all the time and the weight gain which the steroids caused, but I did take my meds most of the time as my parents would watch me every morning and started offering rewards, such as presents, for taking them too.

Blunt consultant

When I was transferred to the adult clinic my new consultant was as blunt as possible, saying it was more dangerous for me to take my medication as and when than not at all, so he took my tablets away completely. Eventually it started to click that I should take them, but I don’t think my consultant was comfortable enough to allow me to do that. Plus, I wasn’t getting more scarring on the liver, so my body was maintaining itself.

Fast forward to my mid-20s and I had also accumulated non-alcohol related fatty liver disease, caused by the increased appetite from the steroids. Because I also had irritable bowel syndrome, I was referred to a dietician who placed me on a low Fodmap diet and advised me to go lactose free so we could find out what foods triggered it. Everything had to be cooked from scratch and I lost six stone and after seven years of trying to conceive, I fell pregnant. I gained three stone during the pregnancy, but the good news was that my bloods were within perfect normal range. After I had my son, I lost 1.5 stone, but then my results started to creep back up again.

Given the state my liver is in means I should be bedridden, but I’m not and don’t have much in the way of symptoms apart from tiredness and pain every so often. I try to ignore it a lot of the time, but the reality is that I have chronic liver disease plus a variety of other health problems.

Just after my son’s first birthday I became pregnant again and had the same weight gain and perfect bloods during the pregnancy, with weight loss after the birth and results creeping back up.

Over the years I have had flare-ups but remain off medications. My sons are now two years old and six months old and my spleen remains enlarged (it went back down after my first pregnancy), my fatty liver remains and my AIH is very much active. Given the state my liver is in means I should be bedridden, but I’m not and don’t have much in the way of symptoms apart from tiredness and pain every so often. I try to ignore it a lot of the time, but the reality is that I have chronic liver disease plus a variety of other health problems.

I am currently waiting to hear if I will go back on medication for the AIH. I have been very clear I do not want steroids because of the weight gain, but I will take the immunosuppression which takes longer to kick in.

Body in ruins

I find it hard because a lot of people, including my family, don’t know what it’s like for me or what having autoimmune hepatitis really means. Not once as a mature adult have I been asked about any therapy so I can talk about how I feel.

When you’re a child yourself you don’t realise what’s going on but looking back, I do regret a lot of it. My body is in ruins and I’m only 30. If only I had taken my condition seriously when I was younger, I might not be in this situation. Now I have children of my own I’m committed to being better because I want to be around for them. I worry that I may have passed the AIH down to them, but they can’t be tested for it until they’re older.

If you’re diagnosed with liver disease, stay strong and remember it’s about how you treat yourself and your body that impacts your life later down the line.

The post Nadia’s story: “My consultant tried to tell me what would happen if I didn’t take my meds, but I thought it wouldn’t happen to me” appeared first on British Liver Trust.

I had no symptoms of liver disease other than infrequent periods, hair loss, and some spider veins on my arms. When I visited the GP about these various issues, nobody raised the possibility of liver damage. It wasn’t until a routine blood test for my lupus flagged an elevated liver enzyme that I was sent for a liver ultrasound and then a biopsy.

Being diagnosed with AIH and cirrhosis at a young age was bewildering. I felt alienated amongst my peers, who were finishing university and pursuing their careers without much thought about their health. There was nobody who I knew going through similar health problems of such a serious nature. I began to doubt my body; how could I appear so healthy on the outside, whilst everything was going wrong internally?

This sense of isolation and insecurity continued to some extent throughout my early twenties, when I experienced repeated flares of AIH. As I started immunosuppressive medication, my hair began falling out much more and I ended up having to wear wigs. Aged 25, I suffered an esophageal bleed and was placed on a variceal banding programme to avoid reoccurence.

As I’ve grown up, I’ve realised that there’s no part of my life that liver disease doesn’t impact.

Around this time, I had something of a mindset shift. I considered myself very lucky to have survived a bleed and despite having a period of decompensated cirrhosis, I was able to recover back to being compensated. I realised that life cannot be taken for granted, and I made a commitment to make the most of each day whilst I am healthy enough to do so.

AIH has opened so many doors for me. I have volunteered with the British Liver Trust for many years now, and am part of the Patient Advisory Group (PAG) who provide opinions on key issues impacting the charity’s work. I’ve also been lucky enough to volunteer as a patient representative on various research projects to improve the quality of life for liver disease patients. During COVID, the Trust established a Young Persons’ Zoom meeting. It was so helpful to be able to chat to others with similar experiences to mine, particularly when most of us were shielding.

As I’ve grown up, I’ve realised that there’s no part of my life that liver disease doesn’t impact. Besides the medical fun and games – the fatigue, infections, banding and bruises – there is a really big impact on relationships (how to mention on a first date that you might need a transplant?), career choices (will I be able to work remotely if I’m fatigued?), and body image (despite its ugly thread veins, moonfaced cheeks and bloated stretch marks, I think my body is truly amazing). When I turned thirty, I was told that it would be incredibly risky and unlikely for me to become pregnant in my current state – and I couldn’t have IVF, either. This was another turning point, and I felt very sad for many months.

As part of processing this, I decided to write a book (‘Get Well Soon’, available on my website www.kirstymills.org) about my experiences with chronic illness to raise awareness of autoimmune conditions and also to reduce stigma around liver disease. It’s the book I wish I could have read when I was 20 and scared about my new diagnosis. Liver disease is not fun, and it’s not pretty, but it’s also been the making of me as a person, and I’m grateful for what it has taught me.

The post Kirsty’s story: “Liver disease is not fun or pretty, but it’s also been the making of me, and I’m grateful for what it’s taught me.” appeared first on British Liver Trust.

In 2017 following a routine blood test I was diagnosed with possible fatty liver disease and further tests showed I had very low platelets and an enlarged spleen. However, after a biopsy in 2020, the diagnosis was revised to autoimmune hepatitis and I was prescribed prednisolone.

For the next few years my blood tests, endoscopies and scans were stable and I felt good, exercised a lot and was only going to clinic every six to eight months. I would occasionally get an infection and go into hospital, but I’d always come out feeling very well. I was assessed for a transplant during one of these infections in 2020, but my doctors decided it wasn’t needed yet.

By March 2024 I tired more easily and walking distances and going upstairs became a problem. Fluid started appearing around my lungs which meant having a chest X-ray and my medication being changed until it cleared. I also started getting occasional bouts of encephalopathy. My first experience on encephalopathy was following an endoscopy. I came home, went to bed and when I woke up I didn’t know who anybody was. It’s such a weird and frightening thing and we didn’t know what was happening at first.

Encephalopathy worsens

I gradually started to recognise when the episodes were coming – they only lasted five or ten minutes and then I was back and would remember every single detail, but I wondered why I couldn’t do anything about it or stop it. By autumn 2024 I was still working and doing all the things I normally did, but was a lot more tired and the encephalopathy was getting worse. I would contact family members and say: “I can’t get hold of mum or dad, you need to take me there” when my parents had died 20 years ago. And every time after the encephalopathy had passed, I would go through the whole mourning process again.

I also started wandering without a clue where I was going. One night it was tipping down with rain and I put my coat on, left the house and walked in my slippers for about five minutes. Eventually I got back to our close, soaking wet, but didn’t know which house I lived in, so I stood around for a bit until I finally remembered. From then on my family locked the doors and hid the keys. They also fitted a camera in the kitchen, got me a watch with GPS tracking and a pin from a dementia charity that is programmed with my husbands phone number in case I ever got lost. It felt intrusive, but it kept me safe. If anyone starts experiencing encephalopathy, I would advise them to tell their team, otherwise it will just get worse and be more frightening.  I took a supplement Lola suggested by my team.  I think it did help a bit.

Because of the encephalopathy I didn’t remember what my doctors were saying so my husband had to be responsible for everything. When my consultant saw my hands were shaking he said I couldn’t drive anymore and two weeks later I was admitted for a liver transplant assessment. I was listed in November 2024 and was so relieved because my illness was affecting everybody’s lives, not just mine.

The donor liver hadn’t arrived yet but they said they would open me up and be ready. I was introduced to everyone in the theatre and felt like they would take good care of me.

I worked right up till the transplant and my boss Mark, was brilliant, but as things progressed, I started working from home for my own safety. When I went to clinic in March 24, I didn’t know who anyone was, so my doctors put on the priority transplant list. I had my first call a couple of weeks later, but the liver wasn’t suitable. A second call came a couple more weeks after that at 4.20am on April 27^th.

I was asked to be at the hospital for 6.30am and was taken into theatre at 3pm – the liver hadn’t arrived yet but they said they would open me up and be ready. I was introduced to everyone in the theatre and felt like they would take good care of me. The transplant took seven-and-a-half hours and when I woke up the next day in ICU I remember my husband giving me ice cubes as I had a terrible thirst.  The day after I had to get out of bed – which I absolutely didn’t want to do, and had to sit on the end of the bed, stamp my feet, stand up, sit down… The following day I refused and they left me alone.

The second day I woke up without the wooziness from the anaesthetics I knew my head was better because I knew what was going on and who everyone was. Now I just had to get better physically, but I was surprised at how weak my muscles felt and it was almost like I had to retrain my body to do everything. Walking any distance or going upstairs was hard but I was determined. After I was moved to the high dependency unit I would get up every day and walk with the physios, my son or husband – whoever was there – and was discharged after nine days. I went back to Addenbrooks the following week for a check-up and that went well, then again the following week for another check-up and they left me for two weeks. It’s got a bit longer each time and as of October 2025 I haven’t been to clinic for two months now.

Life-changing operation 

The operation has completely changed my life and I’ve got my strength, energy and brain back. Before the transplant my speech had slowed because I was trying to think what the words were and trying to form them, but since the operation I’ve been talking ten to the dozen.

When I was first diagnosed  in 2017, I was terrified and didn’t know what it was. Then I found the British Liver Trust – the patient information is really informative and I now follow them online because I’m really interested in medical breakthroughs and new medications.

Because of my donor and their family I’ll be here for my son my grandson and my family. It’s really important people understand what a difference organ donation makes – it’s not just to people’s lives, but to their family too. My 86-year-old uncle kept looking at me and saying: “I don’t believe it”.

The post Jackie’s story: “My family locked the doors, hid the keys and fitted a camera to keep me safe” appeared first on British Liver Trust.

My childhood wasn’t easy. My mum left me and my sister when I was two and we were in and out of children’s homes and foster care for five years while my dad fought for custody. We then lived with him and the lady who became my mum and her three children.

As a child there wasn’t much food that I enjoyed and as I was moving from primary to secondary school I started getting tummy pains and developed a big belly. I was only 12 but there were lots of rumours going around that I was pregnant. Doctors prescribed medication for my appetite, but it didn’t help. They couldn’t explain the pain and told my mum and dad I had malnutrition because I was skin and bone and had the big belly. Then I had a blood test and that same evening there was a knock on the door – the GP surgery nurse said my blood had clotted so they needed to redo the test. I later found out it was because they couldn’t believe that they were seeing what looked like an alcoholic’s blood in a 12-year-old.

I was referred to a specialist at Grimsby hospital, who immediately said it was something to do with the liver and I was admitted and diagnosed with autoimmune hepatitis. I wasn’t too bad until my mum had to leave and then I started crying because I didn’t want to stay there with strange people. Also, there was test after test and I hated needles.

I began deteriorating and spent more and more time in hospital. Eventually the doctors referred me to a liver specialist in Sheffield Children’s Hospital, where I had my first liver biopsy. Luckily, I was sedated for this.

Transplant is only hope 

I don’t remember much about the hospital, apart from a girl with leukaemia teaching me how to make perfume out of flower petals. One morning when I woke up her bed was empty. I was told she had gone home but later found out that she had passed during the night.

Not long after this I was transferred to Sheffield’s Royal Hallamshire hospital, which I hated as in my eyes it was full of old men and women. By this time my stomach was extremely large and the doctors found it hard to believe that my skinny body could bear its weight. When I reached the age of 15 they said my only hope was a new liver.

My final transfer was to the Queen Elizabeth in Birmingham where I had more tests and they had to build me up so I was strong enough to get through the operation. Everyone helped, nurses and patients’ families would all bring me in little treats to try to get me to eat. I was supposed to be on a no-salt diet, but eventually they let me eat what I wanted to at least get some food down me.

I had a lot of doctors round my bed shaking their heads because they didn’t think I would get through the operation, but luckily they took the risk.

My transplant co-ordinator was great and made me laugh. He got me a teacher to help with my schoolwork when I was well enough and made sure I had things to keep my mind occupied. I was discharged, but haemorrhaged on my first night at home and ended up back in Grimsby hospital where they gave me blood for a couple of days and then transferred me back to Birmingham.

I had a lot of doctors round my bed shaking their heads because they didn’t think I would get through the liver transplant operation, but luckily they took the risk.

I was now losing the strength to carry on, but luckily my parents were there to support me. They rented a flat near the hospital and there was always someone with me from when I woke in the morning to when I went to sleep at night. Eventually my sisters came too and went to local schools – one sister has learning difficulties and didn’t really understand what was going on. Our neighbours back home were also great, they sent me letters and my favourite spaghetti Bolognese when anyone was visiting. I am so proud of all my family – it must have been difficult with me getting all the attention.

Mealtimes were still a challenge and my dad would get angry when I didn’t eat, but if he hadn’t pushed me, I would never have pulled through. I went into a coma while waiting on the transplant list which scared everyone, although I came out of it a day later, I wasn’t making any sense for several hours.

Eventually a donor was found, but the liver wasn’t suitable. Some more time went by, I’m not sure how much. I was on drips constantly, either feeding me or giving me blood and was getting weaker. Then another donor became available and this time it was suitable. I asked if I could have some soup first (I’m not sure why) but I wasn’t allowed to eat. I hadn’t eaten much that day and just because I wasn’t allowed, I really wanted to.

I was given my pre-meds and could see the worry in my parent’s faces and had to stay brave for them. When the time came for them to wheel me to the operating theatre, my mum and dad came as far as they could, holding my hand. I still managed to keep up my brave face but deep down I was scared stiff not knowing if I was strong enough to pull through and if I would ever see my mum and dad again.

I was only the 22nd person to have a transplant at Birmingham – the operation lasted about nine hours and I woke up in intensive care. As I was on life support, they gave me a pen and paper to communicate with. I didn’t like it when they turned the life support breathing down as it meant I had to breathe on my own and it was really difficult.

Eventually I could breathe on my own and it felt good being able to talk again. I started to eat slowly but the food tasted funny with salt in it.

Liver rejected

I also had to learn how to walk again and go to the toilet. The toilet was the worst thing, I cried each time I tried unsuccessfully as I knew they would need to put the catheter back in. It seemed to take so long to get back on my feet, but eventually they let me go to my mum and dad’s flat for a couple of hours. One day I think I may have done too much – we family were visiting and that night on the ward I had a fit and woke up on drips. After that I had up and down days and when there were more better days the doctors let me move to my mum and dad’s flat, but I had to visit the hospital every day. Once my visits became once a week, we moved back home.

Family and friends put on a welcome home party, to which I was driven in a white Rolls Royce and things started to go really well, I went back to school and at the age of 16 I started a youth training scheme to be a stewardess and travelled round Europe.

Unfortunately, three years later my liver rejected and I was back on the transplant list, but they amended my medication which seemed to work, I was stable again and back off the list. My bloods have always been at a stable stage which has worked well for me, but I don’t think they will ever be perfect.

I am now 55, fit and well, and have had 40 years of living a normal life and two children, although the pregnancies were not easy.

I would like to thank all the doctors, nurses, friends and family who helped give me a life, but most of all the parents who made that difficult decision to donate their young child’s liver. I will never forget the donor, they are always on my mind and the fact that they lost their lives and I will always keep part of them alive with me.

The post Julie’s story: “I was 12 years old with a big belly and there were rumours going round that I was pregnant” appeared first on British Liver Trust.

It started with the itch and I would scratch myself everywhere until it bled. I visited my GP for a couple of months and each time I got sent away with meds for scabies and told it was allergies. I then went yellow and spent three weeks in hospital while they worked out what it was.

I was diagnosed via biopsy which they say is the gold standard of diagnosing AIH. This, along with many blood tests, showed that I had the antibodies and severe inflammation with some scarring. At this point they said they could control it with medication and being monitored very closely. Luckily the high dose of prednisolone worked, so I never thought I would need a transplant.

Once discharged, I was in clinic once a week until it all settled down and eventually my appointments got down to every three months. I stayed like this for years, with just a few hospital admissions, including one long one for cmv complications. After I had my son in 2012, I had a massive flare-up – my liver enzymes went very high and I was jaundiced again. They tried many different immunosuppression tablets which either had to be discontinued due to side effects or just didn’t work. My numbers were bumbling along, not high but at the higher end of normal, but eventually I ended up with cirrhosis as there had already been significant damage when I was diagnosed.

Severe portal hypertension

I lived a relatively normal life for 12 years with varices that needed banding, severe portal hypertension which caused a huge spleen and surveillance every six months for any sign of cancer (which is the protocol for cirrhosis). I also had to go in every week for an infusion as my body could not control my electrolytes anymore.

Fast forward to November 2024 – I have always worked and loved my job, but I was feeling a bit off. I was struggling to get up and get through my shift, kept getting dizzy and also noticed my eyelids were really puffy. I mentioned this at my next clinic and had a phone call that afternoon telling me to come in straight away because I was in kidney failure. That also pushed me into decompensated cirrhosis and I ended up with ascites and encephalopathy.

I had no idea I had encephalopathy and thought I could hear all the nurses talking about me and saying nasty things, obviously it wasn’t true, it was the toxins going to my brain. I would also call my mum to tell her they were giving me drugs to keep me quiet, but I needed to gain evidence of it before saying anything, so she should keep quiet about it. It was very scary because it felt so real, but I could see my family didn’t think it was true and I was put on medication to hopefully prevent it or at least lessen the effects.

Being told I needed a transplant was a huge shock, I didn’t feel ready at all and kept thinking that things would change and I would push through like I always had

My team at my local hospital, along with my team at King’s, agreed now was the time to put me on the transplant list. Being told I needed a transplant was a huge shock, I didn’t feel ready at all and kept thinking that things would change and I would push through like I always had, but my liver was in such a bad way that I would never get better without a new one. I passed all the tests on the liver transplant assessment and was put on the waiting list.

Come January 2025 I needed drains most weeks and kept ending up in hospital with silly infections that would turn into serious ones. I also had an episode of severe encephalopathy, so they ordered an MRI which showed a brain aneurysm. I was suspended from the transplant list until the neurosurgeon teams could decide if it was safe, which they did. They also noted on my MRI that I had deposits of manganese on my brain. My consultant said that showed just how bad my liver was – it wasn’t filtering anything, just shunting it back into the blood stream.

I was put back on the transplant list on March 24th. At the end of April I arrived at one of my weekly paracentesis procedures looking extremely jaundiced and when the doctors saw my bloods, they said that I would be admitted until my transplant as I wasn’t stable enough to be at home. I was getting sicker day by day, but didn’t get one call about a potential new liver. Even though I hadn’t actually been on the list that long, it felt like a very long time.

The time I spent in hospital was very hard. I looked unrecognisable – I was swollen with so much fluid, bright yellow and my eyes were so yellow they looked green. My son didn’t want to visit anymore because it was scaring him – he’s only 13. I couldn’t even look at myself so I wasn’t surprised, but I missed him so much and didn’t know if I would see him again. I could see the strain it was putting on everyone, my family tried to put on a smile but I could see on their faces they were losing hope. I couldn’t eat anymore, I couldn’t wake up, everything hurt and deep down I knew I had days, if that.

So grateful to donor 

So when that call came at the end of June I was in shock. We were blue-lighted up to Kings and told it was 50/50 if it would go ahead, it did. As soon as I woke up in ICU after the transplant I felt better and already my head was clear. It was like a switch had been turned on and I was me again.

I’m so grateful for my donor and her family and think about them every day and will write to them when a bit more time has passed.

It’s been so hard on my family, they are the ones who got me through all of it and when I could feel the fight leaving me I summoned that last little bit to be here for them. I feel absolutely amazing now, I’ve had a few little bumps, including rejection, but I’m here and it feels great to be alive again.

I will be forever grateful to my family and the amazing liver team at Derriford who have basically kept me alive for 22 years – they are my guardian angels and also the amazing team at King’s. My colleagues at work have been super supportive throughout too, it’s a bad enough situation and work is the last thing you need to stress about so a big thanks to them.

If I can give any advice, it would be to remain as positive as possible and take one day at a time. Surround yourself with your closest ones and try and stay as fit as you can.

The post Emma’s story: “Remain as positive as possible and take one day at a time” appeared first on British Liver Trust.

For as long as I can remember, I led an active and healthy lifestyle. I ate well, worked out and, of course, enjoyed socialising with family and friends over some cocktails. I felt like I was in my prime, but everything changed unexpectedly in November 2021.

I began feeling unwell, with extreme fatigue setting in over the following months. At first, I dismissed it as exhaustion. At one point, I even thought my issues might be related to red meat or tap water. My energy drained away, and I noticed I was losing weight, even though I wasn’t going to the gym. Oddly, I wasn’t concerned — I was still indulging in chocolate, thinking “happy days” because I wasn’t gaining weight. What I didn’t realise was that something far more serious was happening. My skin was becoming noticeably darker, which I mistook for a tan. Little did I know, it wasn’t a healthy glow — it was jaundice, a clear sign that my liver was struggling.

Initially, I thought I just had a bug. Never in my wildest dreams did I think my health would spiral as it did. Then one morning, I woke up, with my skin completely jaundiced and yellow eyes. That’s when I knew something was seriously wrong. I was admitted to the hospital, where blood tests revealed extremely elevated ALT levels (almost 2000) confirming significant liver damage. To make things worse, this all happened in the middle of a house renovation. Feeling dreadful and having to move out of our home at that time was anything but ideal.

My hospital stay turned out to be extensive and full of treatments. I had 10 IV drips, three side biopsies, one transjugular biopsy, three ultrasounds, one MRI, and one endoscopy. Altogether, I spent 29 nights in the hospital, enduring multiple medications and procedures. I was shocked by how many biopsies were required to confirm the autoimmune hepatitis diagnosis. I couldn’t help but joke that the hepatologists must have had a special interest in a classic Irish liver! (I’m Irish by the way!) Due to COVID restrictions, visitors were not permitted at the time, except for a brief couple of hours on Christmas Day. Even when I was discharged, it wasn’t long before the phone rang, and I was told to come back — my medications weren’t working, and I needed to be admitted again.

The specialists acknowledged that while steroids were keeping me alive, they have numerous side effects

During this time, I was placed on prednisolone, which gave me the dreaded ‘moon face.’ I got married while feeling unwell, and I have to admit, it’s hard for me to look at my wedding photos because of how different I looked and felt. The steroids caused hyperactivity, leaving me with many sleepless nights. I endured persistent nausea for 20 months, and for three of those months, it became so severe that I rapidly lost 5kg. The specialists acknowledged that while steroids were keeping me alive, they have numerous side effects. Azathioprine, another medication I was prescribed, caused toxic side effects which I was advised to stop immediately as my body could not tolerate it. I experienced tremors, hair loss, irritability, severe headaches, forgetfulness, and an overwhelming sense of discomfort.

After three challenging years, I’ve finally reached a stable condition. I’m now off steroids and the nausea gradually subsided, but I still remain on a high dose of tacrolimus to manage my autoimmune hepatitis. While it keeps me alive, it often leaves me with severe headaches and more often than not my head has this ‘fuzziness’. Despite the progress I’ve made, fatigue is still a constant companion. I work full time and my weekends are dedicated to recovering as much as possible before starting the cycle all over again the next week. It’s an ongoing battle, but I do my best not to let this condition take over my life.

I am deeply grateful to my husband, family, and friends for their unwavering support through the toughest days and for continuing to stand by my side every day.

Living with autoimmune hepatitis has its challenges. While people often tell me I look well, there are times when, beneath the surface, I don’t feel my best. Still, I refuse to let it stop me from achieving my goals. I won’t let it define me or make me feel like I can’t keep moving forward. Whatever your goal is, taking small steps will get you there eventually.

The post Noele’s story: “After three challenging years with autoimmune hepatitis, I’ve finally reached a stable condition” appeared first on British Liver Trust.

*Abigail was diagnosed with autoimmune hepatitis at the age of 15 and in her early twenties her medical team told her she couldn’t have children. A few years later a new medical team said the data was changing and it might be possible, but miscarriage was not discussed. Thank you for sharing your story, Abigail 

When I was 15, I developed jaundice that lasted a while. My mum kept telling me to drink more water and it would go away, but then I had a variceal bleed. I ended up in my local hospital for months where my medical team put me on steroids on the assumption that I had autoimmune hepatitis. It wasn’t until I was transferred to a bigger hospital and had a liver biopsy that I was given the official diagnosis.

Even though I never fully went into remission, I managed pretty well. I went to uni, travelled lots and did everything I wanted. I was on and off steroids and started Tacrolimus when I was 21. At 27, I was also diagnosed with rheumatoid arthritis.

When I was in my early 20s, doctors briefly mentioned I couldn’t have children. It wasn’t a big discussion and didn’t come up again. At that age, I wasn’t really thinking about kids, so I just shrugged it off.

During the first Covid wave, my partner and I moved to Wales and I got a new medical team. One of the first things they asked was if I wanted children. They said the data was changing and that it might be possible. We had been thinking about adoption, so this threw me for a loop. I had mixed feelings – scared because I’d always been told no, but also wondering why I hadn’t explored this sooner.

I had a great joint clinic appointment with the obs and gynae team. They explained the risks of pregnancy with my medication, but no one mentioned miscarriage, which is the stuff nobody wants to talk about.

My medical team told me I couldn’t have medical management at home and had to have surgery instead. I had to wait for two weeks for it. They were a dark and sad few weeks

We got pregnant the first month of trying, which was a shock but a good one. I had some bleeding at six weeks, but it was fine. Then at around 10 weeks I had more bleeding and found out the baby had no heartbeat. I hadn’t miscarried yet, but my medical team told me I couldn’t have medical management at home and had to go for surgery instead. That made a bad day worse since I had that choice taken away from me. I ended up having to wait two weeks for surgery. They were a dark and sad few weeks.

When I got pregnant, I thought, “Wow, my body can do something right!” But then it let me down again. It felt pretty crappy. I might have felt better if there was a reason for the surgery, but no one could explain why. I wasn’t offered any emotional support, but my nurse specialist was amazingly supportive.

Pregnancy for women with cirrhosis needs to be discussed more, along with the risks like variceal bleeds, medication impacts, folic acid dosage, and pre-pregnancy work like MRIs and banding.

I don’t know why I miscarried. It’s made me anxious about getting pregnant again and potentially needing surgery, especially knowing the miscarriage rate is one in five for everyone. Still, having the chance to try and understanding the possibilities has given me hope.

Going through this journey has been incredibly tough, but it’s also opened my eyes to the need for better communication and support for women like me. We need more conversations about the realities and possibilities of pregnancy with cirrhosis, so others don’t feel as lost or unsupported as I did. While I’m anxious about trying again, I’m also hopeful that sharing my story might help others navigate their own paths with a bit more confidence and understanding.

*Name has been changed as Abigail wishes to remain anonymous

The post Abigail’s story: “Pregnancy for women with cirrhosis needs to be discussed more, along with the risks” appeared first on British Liver Trust.

When Ruth was referred to a gastroenterologist after experiencing pain in her liver and extreme exhaustion he said: “Where have you been? You should have been in hospital.” Thank you for sharing your story, Ruth

My liver journey began about ten years ago. I started to have hot flushes whenever I ate anything more than a snack. I asked everyone I could find for a solution, but to no avail. I believe the hot flushes were a sign that my liver was struggling to digest food and generally not coping too well.

I also had problems swallowing food, particularly fibrous foods which would stick in my oesophagus, causing extreme pain. Things developed further with a lot of pain in my liver, it felt like little bubbles or stones running through it. Extreme exhaustion never left me and sleep rarely arrived.

Several visits to the GP culminated in blood tests showing an ALT of 520. Finally, I was referred to the gastroenterologist to be asked: “Where have you been? You should have been in hospital”.

A year of investigations continued; a case of sepsis followed an inconclusive liver biopsy. The blood test numbers were still high and it took a letter from my GP for the hospital to accept that these were not linked to alcohol. I’m teetotal.

At last, I was diagnosed with Autoimmune Hepatitis.  For me the prognosis was not good, it was to be a fine balance between deterioration of the liver and serious side effects from the drugs.  It was a dark day to be told they could keep this balance going between five and ten years.  My dog had a longer life expectancy than me.

Prednisolone prescribed

I was put on prednisolone and felt great for the first three weeks or so, but everyone responds differently to drugs and after that, it was a slippery slope into depression. Everything became difficult to deal with and I was crying all the time. I called my GP after a particularly bad episode when I had spent the night trying to stop myself from getting a knife from the kitchen and cutting my liver out. *

I was diagnosed with prednisolone-induced psychosis. I stopped taking the tablets and the depression lifted quite quickly. I was still shell-shocked from the diagnosis, prognosis and how my life had changed – this decline wasn’t in any of my plans for the future.

My husband and I both decided to retire – I cashed in my pension and began to make the most of the time and health left available to me. Azathioprine brought the numbers down and as far as I know, I don’t have any side effects from these drugs. Routine blood tests, scans and procedures continued, thankfully improvements could be seen from the results.

I had decompensated cirrhosis and ascites and a hospital consultant told me this deterioration was probably due to the absence of azathioprine for the last year.

A year later a GP I’d never had any previous contact with, phoned me and told me my bloods were fine. He said: “You’re on azathioprine which is not a good drug to be taking long-term.” He told me to stop taking it. So I did. Unbeknownst to me the consultant believed me to be in remission and asked for follow-up blood tests.  At this point I fell through the system; the blood tests were never requested.

Within 11 months I started feeling ill, exhausted, sick and swollen. The GP surgery transferred me to our local hospital and I spent a week undergoing more tests and scans. The results showed I had decompensated cirrhosis and ascites. A hospital consultant told me this deterioration was probably due to the absence of azathioprine for the last year.

Now began the complicated process of undergoing the many tests required to be placed on the liver transplant list. I found myself in the centre of a ping-pong system being passed from one department to another. As fortune would have it, I was blessed to be placed under the care of a local specialist registrar who quite simply saved my life. She understood the complexities of liver disease and the NHS process and arranged all the tests so that I could be swiftly transferred to the care of St James’s University Hospital in Leeds.

Once again, I was told by a doctor, this time at St James’s, that I would be unlikely to see out the next two years. Cue more dark days.

After meeting the surgical team at St James’, I was placed on the transplant list. They embodied a calm, knowledgeable and confident manner. It was a bittersweet moment as I felt deep despair at needing such a process, but grateful relief that I would be in their capable hands.

Since then, the drugs have improved my results enough so that I have been removed from the transplant list. Recent tests have shown oesophageal varices have grown and more drugs are needed. The journey continues.

‘British Liver Trust is a trusted source’

If I had to give any words of wisdom, it would be to make sure you understand your condition as much as possible.  The British Liver Trust is a source you can trust.

Request to be placed under the care of a hospital that has a dedicated liver unit.

Ask questions and keep asking until the answers make sense to you. Know which routine tests are needed and when they are to be taken. Follow them up yourself as it’s very easy to slip through the net of an overwhelmed system. Writing all your questions and their answers in one dedicated notebook gives an easy view of the situation.

Above all else try not to worry, easier said than done, I know! Worry is simply a waste of the imagination; it hangs over you like your own personal doom cloud and brings you no peace. No one really knows what your future holds. Twice I’ve been told by doctors that my life expectancy is short, I’m happy to say I’ve proved both those predicted dates to be wrong.

* Psychiatric disorders are a possible side-effect of all corticosteroids, including prednisolone. Most people will not develop any serious problems. Speak to your doctor if you start to have mood swings, feel low or depressed, or notice any other symptoms since starting your medicine. Never stop taking your medicine without speaking to your doctor, it can be dangerous.

The post Ruth’s story: “Worry is a waste of the imagination. No one really knows what your future holds” appeared first on British Liver Trust.

My journey with autoimmune hepatitis began in 2019. I suddenly started to feel unwell and my energy levels had declined dramatically. Despite sleeping 10-12 hours each night I was still feeling incredibly tired. My full-time job as a beauty therapist was becoming challenging, I was feeling exhausted on each shift and even climbing the stairs at work was becoming a real effort. I felt weak, often getting pains and stiffness in the bottoms of my feet and lower legs.

Over time, this impacted my mental health, I felt so tired and exhausted that during my spare time I just wanted to shut myself off, rest and sleep. I knew something wasn’t right so I reached out to my GP who ran some blood tests. I was told my that my liver test had come back abnormal and they wanted to run further tests to rule out a number of things. Crohn’s disease was mentioned, along with rheumatoid arthritis and lupus, all of which I knew very little about. I was referred to a rheumatoid arthritis specialist to begin with but quickly discharged when they decided that was a red herring. Getting a diagnosis wasn’t easy, it was long road of worry and uncertainty.

Feeling better after prednisone

Then in 2020, at the age of 31, I was finally diagnosed with autoimmune hepatitis and referred to a liver specialist who quickly prescribed me prednisone. Starting the steroids, I instantly felt better, I finally felt like my old self again, I had more energy and the fatigue had improved. I remained on prednisone for several months and eventually the disease went into remission. What a relief, after a long journey and a rollercoaster of emotions, some good news at last!

I began enjoying life again, going to the gym, walking, going on holiday and in 2021, I started planning my wedding. In April 2022 I got married and my husband and I were looking forward to our future together. In October 2022 we found out we were expecting our first baby and were over the moon!

I was monitored closely during my pregnancy because of my autoimmune hepatitis but was lucky enough to have a brilliant pregnancy, with no complications. I felt fantastic, the best I’d felt in a long time! In June 2023 we welcomed our baby daughter into the family and all was well.

Routine blood tests showed my liver enzymes were in the thousands, the highest they had ever been

Then, in September 2023, my world came crashing down when my routine blood tests showed my liver enzymes were in the thousands, the highest they had ever been, even before my diagnosis. I was in shock – despite having a young baby I felt well and had little fatigue.

A new liver specialist took me under his wing along with a wonderful liver nurse who was really supportive and pointed me in the direction of the British Liver Trust for further support. Being a new mum and having all this support around me, along with the amazing help and support of my husband and my family was a breath of fresh air. Before I started medication again my specialist wanted to do a liver biopsy and I had that in November 2023. The procedure itself was uncomfortable, but didn’t take long and after a couple of hours resting I was allowed home.

The biopsy confirmed a lot of inflammation on my liver but minimal scarring and my specialist started me back on prednisolone immediately and then introduced azathioprine which despite reading about the side affects, I reacted well too. I was then back and forth to the hospital for fortnightly blood tests and regular check-ups with the specialist and steadily my liver enzymes came back down to normal range. I was told by my liver specialist that the birth of my daughter had triggered a flare and that’s very common.

British Liver Trust’s support

My appointments are now every three months and I’m off the steroids and just on azathioprine which I will have to continue for the rest of my life, but I feel well, with lots of energy and I’m able to enjoy my baby daughter and be the best mum I can be.

This rollercoaster journey has taught me how important it is to listen to your body and if you don’t feel 100% to seek medical advice and get answers, don’t just brush it under the carpet. It’s been a long and draining progress but I’m so glad I reached out when I did, otherwise my journey could have been very different.

I’m so grateful for the care and support I’ve received from my family, the NHS and the British Liver Trust.

The post Rebecca’s story: “If you don’t feel 100% seek medical advice and get answers, don’t just brush it under the carpet” appeared first on British Liver Trust.

My journey with autoimmune hepatitis (AIH) started back in February 2022, when some routine blood tests showed that my ALT was in the 800s. I’d had no signs that anything was wrong, so it came as a shock and I had no clue what it meant. Things moved quickly, and it felt very scary to be told that if my eyes started to turn yellow I should to go straight to A&E.  I spent most of the weekend looking in the mirror.

I was quickly assigned a consultant, and on my first appointment, he told me I had AIH and wanted to start me on drugs directly. I resisted, as I was in disbelief that I could have such a serious condition. I still had no symptoms, so didn’t believe I was ill. My ALT level was dropping dramatically each time I had a blood test, so I wanted to wait to see if it would come back down on its own. I felt very alone, so searched and found the Facebook group ‘AIH Support UK & Ireland’. Joining this group, gave me some comfort. I wasn’t living this nightmare on my own. It also directed me to the British Liver Trust, which gave me more information. I quickly became very knowledgeable about AIH, and the different drugs used to control it.

I had my first liver biopsy, which turned out to be inconclusive, but as it had been detected early, it showed that there was no damage to my liver. By August 2022, my ALT was refusing to go below 300, so I was told I needed to start on Budesonide, or risk damage to my liver. I reluctantly agreed. It sounds ridiculous now, but when I swallowed that first capsule, I actually sat there waiting for something terrible to happen, but of course nothing did. I’ve always been afraid to take medication, so this was a very scary time for me.

Medication caused fatigue

Having always suffered with mental health problems, this experience was starting to take its toll on me. The drug was causing fatigue, which seriously impacted what I could do. I had to give up certain things that I loved, the hardest being the voluntary work I did mentoring young people. Feeling like my life was over, I decided to seek out a CBT Therapist. Over time she helped me confront my fears, and the mindset I was stuck in, mainly: ‘What was the point of life anymore?’ She introduced me to meditation, to help keep my thoughts in the present moment and to stop me worrying about the ifs and buts of what could happen in the future. During one session, while I was relaying again, all the things I couldn’t do, she took the brave decision to challenge me. She told me to stop thinking about all the things I couldn’t do and focus on what I could do. This shook me a little, but it was exactly what I needed.

I joined a monthly meditation and journaling group. I got more into meditation and also started to journal about my feelings and worries. These both helped me enormously. The lady running the group also recorded monthly podcasts, where she talked about how to cope with life’s challenges. During one podcast she was interviewing a lady who had followed her dreams and changed career. Although I was already retired, I felt inspired. This got me thinking and I came up with a brilliant idea. I could use my love of crafts and meditation and start a little Mindful Craft group of my own in my home. By this time I felt that I could write my own meditations, and use them to help other people. To my surprise, people enjoyed them and they also encouraged me to record them and load them onto a You Tube channel. It’s early days, but my group is still going and I’m writing one or two new meditation pieces a month. I’m loving it, and feel like I have a purpose and a future again.

My ALT level had been stuck at a hundred for some months, refusing to come down any lower on steroids alone, but for some reason my consultant refused to start me on an immunosuppressant.

During this time, I still had further challenges to face, but now felt stronger and more able to fight. Unfortunately, my ALT level had been stuck at a hundred for some months, refusing to come down any lower on steroids alone, but for some reason my consultant refused to start me on an immunosuppressant. I had learnt enough from the Facebook group to know this is normal practice with this condition, so I got a second opinion. This resulted in me finding out my opinion was right, so I asked to change to a consultant that would treat me using an immunosuppressant. Once I started on Azathioprine, my ALT started to reduce again, and in October 2023, it was finally back down in normal range. This meant I could start to wean off the steroids, which in turn reduced the fatigue I was feeling. A celebration indeed!

It’s normal to feel overwhelmed

If I had to give advice to someone on this journey, I think I would say that in the beginning it’s normal to feel overwhelmed and lost, but know that it does get easier. Become knowledgeable about your condition. Some consultants are more knowledgeable than others, so don’t be afraid to fight for the treatment you deserve. And know this is not the end. Just keep facing forward and focus on what you can do.

I confess that my life isn’t always positive, as I still face challenges, like still being afraid to travel. But when I find myself focusing on what I can’t do, I have a favourite quote I use.

‘The secret of CHANGE is to focus all of your ENERGY, not on fighting the old, but on BUILDING the NEW!’

 I’ve also started writing poetry as well now, and have been told I’m a natural. How did I get to aged 62, and not know I was good at writing!

The post Chrissie’s story: “Focus all of your energy, not on fighting the old, but on building the new” appeared first on British Liver Trust.